Have they changed the DLA special rule??

Just would like to know what you think about this.

I have read lots of post on here about if we have seondaries, we can automatically apply under the DLA special rule. Has anybody been told they can’t get it??

I applied a few weeks ago after ringing macmillan and confirmed that I can do so. Got a phone call today saying that their doctors has looked at my information and has considered me responded well to my treatment and will be able to live long than 6 months!! I’m very pleased about that. But that’s not the point, is it?? And on the basis of that, they won’t be able to make the claim for me under the special rule. When I quoted the words of the macmillan support worker and the posts on here about people living for over 3 years. The lady told me that I can apply for it, but that doesn’t mean I can get it!!

Then she asked me over the phone lots of questions about how much personal care I need. And they’ll make the claim that way.

I’m very confused now. I’m obviously happy that more people think I can live longer, but that extra bit of money would just help a little bit more now I’m working part time.

Can anyone advise?? Thank you

Hi M1yu,

So me and you in the same boat with this DLA, I was told to apply for DLA, found out I had secondaries mets in lungs just after finding out about the primary tumour in my right breast earlier this year beginning of march.

Shortly afterwards I decided to apply for DLA. Phoned macmillan they started the ball rolling and I duly filled in the forms ticking the special rules, my GP filled in the DS1500, DLA phoned and did’nt agree with my GP’s opinion and filling in the DS1500 that I only had 6 months left to live, they now are waiting for my Onc to confirm the DS1500 and as he has just got back from the states has not had time to fill in there forms, too busy trying to help people suffering with cancer and not pen pushing!!! So if he fills it in then they might give me it if not then no they wont. I am so skint I have practically sold everything on ebay that was worth anything got to go through my jewellery next if this carries on, its been at least 8 weeks so far and still no word from them, macmillan keeps phoning them but they have not heard back from Onc yet, so no answer.

And it is totally ridiculous that a dr has to sign a form that stipulates how long someone has left to live, yet in the same breath they will review the DLA award in 3 years!!! how nuts is that!!! total contradiction.

There is no simple answer to your question (should be flippin simple) M1yu but dont hold your breath about this one, they seem to be tightening up on the DLA yet if you are a drug/alcholol addict you might get every benefit known to mankind, personally I feel we deserve the extra DLA money to help us through this utter nightmare.

I am still waiting for a reply about this and phone most days either macmillan or DLA, they even made out that I had filled the forms in incorrectly and totally ignored the fact that I ticked the special rules box, spent at least 2 weeks trying to get me to fill in the extra part of the forms (special rules do not have to fill in certain questions and sections of the forms), I think they are simply stalling for time, perhaps they think I might not make it so they wont have to pay any money out, this would not surprise me, but it is food for thought and will be making notes about this experience I feel a strong letter is on the cards.

There has recently been a review of DLA. i have just looked at the info on directgov. Here’s the link:


It does specifically say the Special Rule applies for people not expected o live longer than 6 months.
Good luck with your applications.

Hi Sarah,

So sorry to hear about your financial situation!! That’s outrageous!!

My onc told me that in the very unlikeliest event, I will die in 6 months. And he was a bit reluctant to fill it in as well. But macmillan was telling me that when a DS1500 was filled out, that doesn’t mean I’ll die in 6 months. But we can still apply under the special rule because we are considered to be “terminal”.

We’ll either have to get really fit to earn enough income ourselves or become so ill to the point we can’t get out bed. Otherwise, those “in-betweeners” like us will just be left out.


Hi there, In the last 12 weeks i have been sucessful in getting both the dla and the mobility award. I waited patiently for 8 weeks and had no aknowledgement, then I contacted my mc nurse who chased it up. she was told that they had no record of my claim so we had to set about re doing the form and getting another DS15000 from the doc. While i was out refilling in the form I had a call on my machine from the dla saying they had found my form and were processing it at the time and would get back to me, I returned the call when i got in and heard 5 minutes later that my claim had been processed. I got full dla and full mobility. Since then my walking has improved emormously as I have had rads to my back and many of my symtoms have gone. I don’t feel a fraud, however because no one sees beneath me looking well and sees the complete and utter weakness i have. I used to be both a driver and a gardener, now I can’t even lift a watering can!!!
I hope to get a mobility car but am having trouble as so many parts for new cars are made in japan and they are not available.
I hope this gives hope to everyone, my ex husband works for the DWP and says there has been a big shake up in dla and they have been inundated with applications before the april !st cut of date before the rules changed so are in a muddle.
good luck all
clare xx

Hi Ladies,

Received a letter today regarding my claim for DLA and the renewal, I was awarded DLA back in May last year after 5 months of waiting, my award was for 1 year and runs out in June this year. Since then I have been through chemo, surgery and rads and am permanently on tamoxifen and herceptin or for as long as they both seem to be working (fingers and toes crossed) I have secondaries on my lungs and was dx with both primary and secondaries from the start back at the end of feb last year, since having all the treatments and surgery I am now without a right breast and lymph nodes in the affected armpit the shoulder of which causes me a great deal of pain and I remember the lady that did the initial biopsy could see on the screen saying that I had arthritis in that shoulder, I get backache constantly and my breathing is affected can be quite scary at times gasping for breath, when I first applied my Dr filed in the DS1500 form however the DLA told me they would award me the DLA for a year without taking the DS1500 into consideration because and I quote “we do not believe the DS1500 is appropriate at this time” !!!

My question is should I get my Dr to fill in another of those DS1500 forms? and if not has anybody else with secondaries been awarded DLA without DS1500, also they mention something about doing home visits!!! whats that all about??? checking to see if I’m really sick!! The lady on this forum that told me about applying for DLA who had the same dx as myself has sadly passed away, I truly don’t want to be worrying about this but can feel I am going to get stressed out as if I haven’t got enough to be stressed out about without the benefits starting to question me. I rely on the DLA money so much I was self employed before all of this started and have not been able to face working yet still adjusting to being sick, spend most of my time emotionally fraught and physically unable.

Any advice greatly appreciated
Love to all
sarahlousie xxx

Hi everyone
I approached my mcmillan advisor re the DS1500 (I was diagnosed last august with bone mets all over my skeleton) as she asked me to check with my oncologist. So I phoned my bcn and she called me back today to tell me that my onc won’t issue the form to someone like me as she thinks i will live longer than six months. I feel really tearful and a bit of a scrounger.
I went back to work for five weeks but couldn’t manage due to pain and fatigue, not to mention all the emotional stuff. I don’t mean to sound rotten or bitter but i’m pretty sure that the oncologist has no money worries and as i’ve read often on these forums, i’ve worked all my adult life and will not live long enough to claim years of a state pension.
Clinically my care has been good and i’ve no complaints about that at all. i just wish that consultants understood what it’s like to struggle financially. I am now in tears and feel that i’ve somehow been on the make and tried to cheat the benefits system by asking for this DS1500.
I’d especially like to hear from people in the West Lothian and Edinburgh area, but will take advice from anyone, anywhere!
Good thoughts to you all. x

i was awarded higher rate DLA care and mobility indefinately(not sure what that actually means but I assume 3 years) without DS1500.
I could not bring myself get that filled out so filled out all the individual forms,answered every question in great detail and sent copies of every hospital letter,scan result and prescription I had been given.I asked them to write to my oncologist.At the time I was mid chemo so it was no problem to tell them how I felt.
Just tell them how everything is on your worse day,how you feel emotionally as well as physically and how you need help physically to live a normal life.Personally I cannot function withou OH doing many things for me.
Not sure I would fill it out myself again.When it comes up for renewal I will ask Macmillan adviser for help as the rules seem to keep changing.I also have a motability car and could not function without it.
Good luck and hope you can get help with the forms.I did have to appeal originally as at first I was only granted the lower level care element.

L xx

M1yu, is it possible for you to appeal? It sounds to me that the DWP in your area could be interpreting the DS1500 rules wrongly. My understanding of the rules (and perhaps others will correct me if I’m wrong), is that they require a possibility that the applicant will die within six months - not that they definitely will.
I receive DLA under DS1500 rules, because my GP believed I would die within six months (as my cancer was behaving in a very aggressive way at the time. I guess the DWP quacks agreed with this because the C had actually burst a lymph node in my neck. But luckily for me, I responded to treatment, things calmed down, and I’m still here.
Seems to me that you’re being penalised for responding to treatment. What the bean counters need to understand is that it doesn’t matter how well anyone has responded. If someone has secondary cancer and it gets going, it can whizz through the entire body in 4 months - and nobody can predict whether that will happen or not.
Do hope you can sort something out.

Thanks Lucinda.
I have washed my teary face and resolved to tackle the form the way you have described. I have a work colleague who can help me with the form or i will get mcmillan advisor’s help. Will post as i progress.
Onwards and upwards!

I never understand dla I’m on full rate but only for 3 yrs without my oh help I cldnt function properly go out in wheelchair need lift in bath on chemo my onc says I shld of had it for ever I’m stage 4 never gona change but still only 3 yrs award sum plp only got a yr never know how they sort it

Hi LM and the new one on this thread.

It seems I’ve “lost” this thread for some reason and didn’t provide an update. I did appeal, but it was after the 3 months allowed appeal period - due to rads, moving, etc… and I was given DLA under the special rule for 3 years, that was last Oct I think.

I went to the local CAB and they filled the new form for me. I was in the process of getting a new DS1500 from my onc, but then the appeal decision came back saying the previous decision has been over turned because I had to go back on chemo after 10 months on hormonal treatment.

I haven’t been able to work since the end of Jan, so the extra income has certainly helped a lot.

Not sure what the policy is like now, but hope all the new ones can get the help you need.

M xx

m1yu, really glad to read that you got it in the end. We have enough on our plates without fighting bureaucrats as well. Actually I do worry that when my three years is up, they will stop my DLA, as like you, I have responded to treatment. Would be quite tough financially as my hubby retired at Christmas so that we could spend more time together.

hi ive just rung dla to ask a question what she was saying but not in so many words because we have sent in a ds1500 that is why we only got it for 3 yrs because they exspect us to die within that time frame not gd so we now have to decide to chance going for doing it without the form what a pain laura

Hi Ladies,

I thought the DS1500 meant that you are not expected to survive longer than 6 months if this is so then why do they award it for like me a year or in others 3 years?? The whole thing is a contradiction and just does not make any sense. Just had too put my application in was awarded it for a year last June so now worried sick that they might not give it too me again, like Lemongrove has said we could do without all this worry, its bad enough dealing with the disease let alone all the bureaucrats.

I think they need to bring in a new benefit for the terminally ill, this would save a lot of confusion as we all know we are not all disabled ie in a wheelchair, but maybe we have other issues that are just as problematic like breathlessness or breathing difficulties, pain, coughing, tight chest, this gives rise to panic, anxiety, stress, and worst of all sheer terror, somedays I’m ok, somedays I’m really not ok and extreme fatigue from coughing all night means I can’t get off the sofa or out of bed, but I know one thing and that is this I have tried to get a job over the past year applied for at least 10 and no one wants me anymore because of my dx, I suppose given the choice between well person and sick person they are always going to choose the well person, even had one company phone me up and chase me (this was whilst going through rads) eventually told them about my dx and they dropped me like a lead balloon. It is a legal requirement to tell a company about your condition??? is’nt it???

Sorry ladies but had too get that off my chest, been so stressed out about re-applying just sent the form off and my GP gave me another DS1500. Laura you can get another DS1500 filled out from either your onc, BCN or GP.

Sending you all my love
sarahlouise xx